Side effects predictions/experiences
Posted , 13 users are following.
Im now into about 8th month at around 10mg, despite instructions and warnings from Rheumy. I'll stay as long as it takes but I'd like to know at what dosage and how long it takes for some of the side effects to leave. I'm speaking about things such as memory problems, tremor, purpura, balance loss, etc. I'm sure I won't see any improvement at 10, but it would be nice to look forward to loosing some of the worst when I can get my dose smaller.
Paul
2 likes, 68 replies
MrsO-UK_Surrey paul45653
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Eight months at one dose without trying a reduction is a very long time (unless, of course, you have been following the Bristol protocol from the start). With those side effects you are experiencing, and if you are symptom-free, if it were me I would be attempting a reduction in dose, even if it is only a very small one.
As for how long it will take for those side effects to leave, depends on the individual. Certainly, I only experienced most of those problems whilst on the high steroid doses (I started at 40mgs for PMR and GCA), although my balance problems remained a little dodgy throughout, finally resolved with Tai Chi classes.
If those side effects are severe, I would be inclined to heed your rheumy's warnings.
tina-uk_cwall MrsO-UK_Surrey
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as Mrs o has said if your PMR symtoms have gone and you have not experienced them for at least 6 weeks I also would be inclined to start reducing, perhaps, 1 day 10 mgs the next day 9 mgs and stay on that dose for 6 weeks and then if you are well there then go onto 9 mgs for 6 weeks. But as I say I'm not medically qualified. Christina
Angela345 paul45653
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pat38625 Angela345
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tina-uk_cwall pat38625
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last week as part of my New Years resolution I started a diet. It's not a recognised diet but I attempt to reduce my carbs and eat more anti inflammatory foods as well as reduce my general food intake. I have lost 5 lbs. I know that the first week if a diet is always the easiest and most people lose the most weight then but I'm really optimistic that I wiil succeed. Christina
tina-uk_cwall
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Angela345 pat38625
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Angela345 tina-uk_cwall
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Padada tina-uk_cwall
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tina-uk_cwall Padada
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When it comes to anti inflammatory 'natural' remedies, just take care that they can be taken with your prescribed drugs, always check. Now wether these foods will work I have no idea but at the very least they are all foods that are good for you and they are recommended by the arthritis society for rheumatoid arthritis, which I know we haven't got but we nevertheless do have an inflammatory condition. Christina
MrsO-UK_Surrey Padada
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I ate plenty of oily fish (sardines (with bones - good for our bones), mackerel, salmon and trout, beetroot, avocado, garlic and turmeric (the spice, added to suitable meals such as casseroles, risottos, etc. Diuretic foods can help to avoid steroid-induced fluid retention - asparagus, garlic, fennel, melon.
Foods to avoid are refined carbs which can increase steroid-induced weight gain, for instance white potatoes and parsnips which turn to sugar in our bodies and could add to the risk of steroid-induced diabetes. Avoid all processed foods.
Coffee, sugar and alcohol can stress the adrenal glands which are already being suppressed by the steroids, so avoiding them can help.
Of course, none of these foods will cure us, nothing does at present, but I did find that if I missed out on my usual few portions of oily fish a week I would notice worsening symptoms.
We had an NHS dietitian giving a talk at one of our PMR support group meetings, and gained lots of helpful advice from her, the best being that dark chocolate is anti-inflammatory!
pat38625 tina-uk_cwall
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EileenH pat38625
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I went to a club (Rosemary Conley) a long time ago and lost some weight, but the final "aim" was set far too low and I continued paying full wack and never had any chance to getting to my target weight and lower rates. Plus I could go to any available classes - but the nearest other one was 10 miles. Had I been able to go to a few for the exercise class I wouldn't have minded so much. It did provide a low impact class that got me into exercise though - so it wasn't all bad, just the charges added up!
tina-uk_cwall pat38625
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pat38625 Angela345
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EileenH tina-uk_cwall
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You have to remember that you are on pred which changes your metabolism so slow isn't surprising and you shouldn't get disillusioned. Losing it slowly also means a minimum of wrinkly skin - and it is more likely to be fat that goes.
My diet is protein and veg but not complicated by "can I have it today?". Very little bread, pasta, rice, potatoes or other root veg besides carrots (not more than a couple of ounces of any one on a day, not 2oz of each!). Meat portions the size of a pack of playing cards and unlimited green leafy and other vegs (courgettes etc), salad stuff (dressed with oil and vinegar and dried herbs) to fill up.
Using the 5:2 combined with this means dining out isn't a problem - and you don't deprive yourself ever. If I want a dessert - I have it. Just not every day. But I do eat a square of high quality chocolate every day...
pat38625 EileenH
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pat38625 tina-uk_cwall
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lodgerUK_NE pat38625
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I lost my appetite and still put on weight.
I would be changing my slimming club they obviously have little or no experience with prednisolone. It was the earliest and most common side effect.
pat38625 lodgerUK_NE
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Thanks
Pat
EileenH pat38625
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Some people get ravenously hungry and eat non-stop and there is no question why they gain weight. Others don't change what they eat and still put on weight. A few lucky people lose weight!
I had put on weight because of being unable to move and exercise normally with the PMR, I wasn't on pred so it wasn't that. When I first started pred I didn't GAIN any weight but it redistributed to my middle, the back of my neck and a bit around my face. Then I was put onto Medrol, I didn't change what or how I ate but I gained a LOT of weight, especially around my chest and waist and on my neck and face.
Pred changes the way your body metabolises carbohydrate and makes your body tend to store more fat and in particular places, often making you more apple-shaped. It also can lead to fluid retention, making you feel and look puffy. That too causes weight gain.
But the weight gain that is associated with pred is NOT ONLY due to eating more because you get the munchies, it is also to do with your body changing in the way it works. I've heard nurses insisting you only put the weight on because you eat more - but they, and your slimming club consultant are wrong I'm afraid.
pat38625 EileenH
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EileenH pat38625
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I never eat breakfast under normal circumstances - I didn't eat breakfast as a teenager but started doing so later in life because of all the insistence it was bad for you not to eat breakfast (a theory now shown to be untrue) and people who ate breakfast were slimmer/ate less. I have struggled with my weight for years. Then I saw articles about this change of idea, that some people don't need breakfast, and decided to try it out in combination with the 5:2 diet. It makes no difference at all to what I eat the rest of the day - so, for me, having breakfast added some 200 calories a day that I probably didn't need. I eat dinner at 7.45pm and the next meal I eat is lunch at 1.15pm - and when you read the theory of the 5:2 diet they say that helps you be in a "fasting" state and avoid weight gain. Whatever - since then I have been losing weight, I feel and look well, I am rarely hungry except at mealtimes and I eat when I want to eat - not to the clock.
Interestingly, if you google BMI calculator and choose the one on the NHS site, having entered the information it asks for on the final page it tells you your BMI - and at the bottom of the page it tells you how many calories you require. Everyone is a bit different, we don't all have the same metabolic rate.
I am currently 70.7kg at 1.55m and that makes me at the top end of overweight, finally not obese. The calorie requirement range they give is 1444-1857. If the calorie count I need is 1450 and I go on eating/drinking 1850 calories, I am taking in 400 calories a day more than I need - that turns into fat deposits. It is enough to put on at least a couple of pounds in weight a month! Or, the other way round: if I'm eating 1850 calories when I need 1450 and I change how much I eat to the lower level - I could be losing 2 or 3 lbs a month.
Once your body learns to utilise your body fat to make up any shortfall in calories (which it is designed by nature to do) then you will start to lose the excess body fat and lose weight. To do that you need to restrict carbohydrate intake - not take it out totally necessarily as in the old version of the Atkins diet, but eat moderate amounts of protein and fat with veggies and salads that have some carb but not a lot so you can eat enough to fill you up and not have a rumbling tum! Then you use up fat stores and not muscles to get your protein intake.
doug36397 tina-uk_cwall
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the highest natural anti inflammatory is fish oil...I use it a lot for dry eye patients who mostly are women with sub acute infammatory issues. you need to take 3 1000 caps or the same amount in liquid to see the results in most cases Best of Luck Doug
Padada doug36397
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(There is just so much help on this site! It is a miraculous site and to all who give their advice - God Bless you)
tina-uk_cwall doug36397
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EileenH tina-uk_cwall
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It is reckoned that, in winter at least, there is no problem with taking doses up to 10,000 IU, 250 mcg unless you already had a very high vit D level to start with. During the winter I take 5000 IU most days and most up-to-date doctors would advise at least 2000 IU (50mcg) for everyone in the winter:
I realise this quote is from the VitD Council who exist as a pressure group to promote Vit D research and supplementation but
"Dr Heaney at the Creighton University Medical Center in Omaha Nebraska, one of the worlds leading authorities on vitamin D recommends that adults should take 5000IU per day to achieve optimal levels. This is also the suggestion of the vitamin D council in the US who state that if you regularly avoid sunlight exposure you may need as much as 5000IU per day.
Dr Cannell of the Vitamin D council in USA recommends 5000IU per day during the fall and winter, and 2000IU per day during the rest of the year."
No need to worry about taking 2 or 3 lots of "RDA vit D" as it has been set!
pat38625 EileenH
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EileenH pat38625
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Fingers crossed for tomorrow!
pat38625 EileenH
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EileenH pat38625
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pat38625 EileenH
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tina-uk_cwall EileenH
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thanks christina
EileenH tina-uk_cwall
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A couple of years ago a local orthopod did a study here and found over 80% of residents had very low vit D levels - we live far enough south (level with Turin and Conneticut) for it to be possible to produce vit D in the skin at midday most of the year but people are still deficient She recommended 2000 IU/50mcg a day as supplements.
In the USA and Canada some foods are fortified so if you are there a quick label check won't hurt. In Europe there is little other than margarine - except that doesn't really count as "fortified", it has vit D added to bring it to the same as butter!
And a warning: if you need more vit D than you get from the calcium/vit d supplements NEVER take extra combined tablets. Buy plain vit d tablets. I have heard of a DOCTOR telling someone to take extra calcium/vit D tablets - don't, as it gives you far too high a dose of calcium and that is dangerous.
paul45653 Angela345
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Paul
tina-uk_cwall EileenH
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